Story from Europe - 3 month after ivig - loud vocal tics

[croatian mum]

hello to everyone,

 

I'm new here..

I'm from Europe- Croatia, small mediterrian country right next to Italy.

I apologize if my english is not that good, hopefully You will understeand me.

Our 12 Y.o. son has developed his first tics at the age of 6. Thinking back, he had a lot of different small tics, but in time they have progressed. At the age of 8; he couldn't stop the shouting, his vocal tics were so loud..they were driving us crazy. His motor tics were also terrible at the time. Our country is too small and the doctors here have absolutely no experience in treating tics; so they told us that he has TS, ADD, ADHD and that there is no help..They put him on Haldol, which was a terrible time for us. So we find help in Italy; at the Tourette clinic in MIlano; and the doctors gave him at first Risperdal; than Orap. The tics were gone for some time, but he was overweight; tired and sleepy all the time.

A few month ago, we came across one doctor from Croatia; who is working in Chicago with PANDAS children; we set an appointment with him during the time he was in Croatia - and by his opinion - he hasen't got TS - it's PANDAS!

So, the next logical step was IVIG; which we have done in June, this year. Full dose; split in 2 days; and the procedure lasted 12 hours.He had some terrible side effects during it - headache fever ecc. Right before that he was on Augmentin, and because he had at the same time developed some side effects from Orap, we desided to took him off of all the other medications. He was taking only antibiotics.

Things were great - he had some ups and downs; no ''turning back the pages'' as we expected it; some more OCD than usually and some motor tics but in generaly he was doing just fine untill 4 days ago. Than the shouting was suddenly back. So, now, he has again this loud scream, every 5 seconds, and we don't know what to do. No one to turn to. Most of the doctors in Croatia have never even heard about Pandas.So, I was thinking maybe someone here can help us..

 

 

*I've read some posts here that about 3 month after IVIg in most of the cases things are getting better and better..

In our case is the opposite - it was great and now it's terrible.

So, the question is :

 

is it maybe possible that this is a part of IVIG since he had no worsening untill now? that the ''turning back the pages'' had just began now - after 3 months;

OR is that the IVIG is not working for us?

How do I know the difference?Has anyone had a simmilar experience?

 

Thank You for Your answers and I apologize for my grammar mistakes -

[mdmom]

You are in good hands connecting with other parents on this forum.

 

It is quite possible your son might need another round of IVIG - many children talked about on this forum have needed multiple IVIG treatments for PANDAS.

 

While you are searching for more help, you might try giving him ibuprofen. It reduces brain inflammation. Dose it three times a day during the PANDAS exacerbations.

 

I cannot speak much more about IVIG, as we have not done this treatment yet; however, some others should be able to give you more information.

[cobbiemommy]

My son also fell apart about 8 weeks after his first IVIg two years ago. It turns out that he also had Mycoplasma Pneumonia and Lyme/Bartonella. I don't know what the incidence of Lyme is in Croatia, but I am sure that Bartonella exists there.

 

Did you see Dr. Kovacevic? If so, he has a website: www.webpediatrics.com Maybe you could contact him that way and get some assistance.

 

Some children need more than one IVIg and some need IVIg and treatment for other illnesses. Augmentin does now work against Mycoplasma Pneumonia or Bartonella.

 

Good luck.

 

Cobbie

[kos_mom]

Dear Croatian Mum,

 

Perhaps you could clarify a couple of things. On what basis did the doctor decide your son have PANDAS? Did he have a history of tic/OCD exacerbation following strep or some other infection like myco plasma pneumonia? Was he tested for tick borne diseases like lyme, babesia, or bartonella? Some kids are not successful in IVIG because they had tick borne diseases that were not previously identified.

 

It is not entirely clear to me from your email whether your son is still taking antibiotics. If he isn't, it is entirely possible he has acquired another infection--strep, mycoplasma pneumonia, Ebstein Barr or cock sackie to name a few--and is reacting to that. In that case, you need to get him tested for possible sources of infection and get him treated as soon as possible. Using ibuprofen in the meantime is a good suggestion or, if Croatia is a country where you can get antibiotics from the pharmacy without a prescription, put him back on the Augmentin until you can get to the doctor and get the test results back. If he is still on the Augmentin, he may need a higher dose or a different antibiotic like azithromycin.

 

You say the doctor was visiting Croatia from Chicago. There is a well known PANDAS expert from there, Dr. K. You can find his full name under abbreviations in the sticky thread at the top of the forum or look him up on his website mentioned by Cobbiemommy. If it is that doctor, or a doctor working with Dr. K, you could try to email him with your problem and see what he would suggest. Dr. K in any case will take emails from parents, so you could email him about your son. Be concise in the email, but be as specific as you can about previous infections and previous antibiotics taken to address the tics/OCD (the psychiatric drugs history is not so important), as well as the date of the IVIG and what antibiotics (including how many mgs a day) he has taken since then and the date he stopped, if he has. Dr. K is very responsive to emails and you should get a response in the next day or two.

 

Finally, since you have been willing to go to Italy in the past, you might try contacting this doctor for advice or a possible in-person consultation:

 

Dr. Carmela Caputo

S. Giuseppe Hospital, Department of Pediatrics

via Boccaccio

50053 Empoli (FI)

phone: +39 347/6966569

or: +39 571/706452 or +39 571/706455

caputo.carmela@virgilio.it

PANDAS Italia Associazione di volontariato

pandasitalia@gmail.com

 

Empoli is outside of Florence. I know nothing about this doctor, but she is listed as a PANDAS provider on this site:

 

http://www.savingsammy.net/providers.php

 

I hope this helps--good luck,

 

Ko's Mom

[nicklemama]

I would send an email to Dr. Kovacevic. He will advise of what to do next. He will correspond with patients and since I know Dr K is from Croatia, I'm guessing that is who diagnosed your son. http://webpediatrics.com. You can send him an email from his website. He is my son's doctor, as well.

[EAMom]

So he had IVIG in June...and would you say he improved overall after that (until a few days ago)?

 

I'm pretty sure TS wouldn't improve with IVIG.

 

I wonder if there is an infection (could be strep or otherwise). Was your son out of school for the summer, and now back in school?

 

Is he still on antibiotics? What dose?

Edited September 27, 2012 by EAMom

[tpotter]

I was going to say the same. He may have been exposed to infection. Also, have you tested everyone in your family for strep and mycoplasma pneumonia? You want to make sure that your family is not "carriers" (personally I think that just means that the person has strep, but they haven't figured out where it is.) I agree with emailing Dr. K (webpediatrics.com) for followup suggestions.

 

BTW, your English is beautiful!

[croatian mum]

Thank You all for Your answers!

 

The doctor gave him te diagnose based on his condition (vocal, motor tics, OCD, behavior; rage, ecc), and previous strep infections. The diagnose came 6 years after the simptoms started. No one (as far as we know) has never checked for myco plasma pneumonia lyme, babesia, or bartonella, simply because there are no doctors here! We have seen so many different doctors, but with no sucssess. It is difficult for us, because you have at least the doctors and experts there, and here are NO proffesionals or any other doctors with any clue about it.

 

That's why we went to Italy.Before IVIG I have consulted this italian doctor who gave him TS diagnosis 3 years ago. But, he just DON'T BELIVE in pandas and IVIG treatment; and he sead that PANDAS is not yet confirmed – BUT – that he agrees about possible strep conection. So, we were affraid to tell him that we will do IVIG – because he was so much against it; and we didn't want to lose the only doctor who was available.

 

But, after reading and spending hours on this forum we decided to do it. We never told him.

 

My son is now on Augmentin from 01.06.2012. He was taking 850 mg of Augmentin for 2 weeks before IVIG; and 2 weeks after IVIG. Now, for the last 2,5 month he is taking 345 mg of Augmentin per day. 2 days ago, I started to raising the dose; so for the last 2 days he is on 850 mg augmentin daily.

We were at the hospital 2 weeks ago, because he had vascullities; and they made there all the tests including troat culture; wich came back fine - no strep ; but they found CANDIDA ALBICANS; so he is taking NISTATIN and probiotics.And that's all.

 

After IVIg his condition improved – he was medication free, but, I must also say that last year, ( when IVIG was not even in our minds, ), during the summer hollidays we decided to try to put him off of medications, and he was tic free for 5 month. Than it all came back suddenly, just overnight. He was back on Orap again untill June this year. Than we tried IVIG. So, we still can not tell if the improvement is because of IVIG or…?

Even do, I have noticed 1 thing: before IVIG; when his vocal tics started they never improved whiteout medication (Orap, Risperdal); and after IVIG it seems that they come for 2 – 3 days, and than they stop. Hope this time will also be like this..

 

I agree, I will write to dr. K today.

 

 

Thank You ko's mom for giving me the adresses - I will contact them definitly.

At least, You in USA have some options - here aren't any..! So, this forum means really a lot to me..

[EAMom]

Thank You all for Your answers!

 

The doctor gave him te diagnose based on his condition (vocal, motor tics, OCD, behavior; rage, ecc), and previous strep infections. The diagnose came 6 years after the simptoms started. No one (as far as we know) has never checked for myco plasma pneumonia lyme, babesia, or bartonella, simply because there are no doctors here! We have seen so many different doctors, but with no sucssess. It is difficult for us, because you have at least the doctors and experts there, and here are NO proffesionals or any other doctors with any clue about it.

 

That's why we went to Italy.Before IVIG I have consulted this italian doctor who gave him TS diagnosis 3 years ago. But, he just DON'T BELIVE in pandas and IVIG treatment; and he sead that PANDAS is not yet confirmed – BUT – that he agrees about possible strep conection. So, we were affraid to tell him that we will do IVIG – because he was so much against it; and we didn't want to lose the only doctor who was available.

 

But, after reading and spending hours on this forum we decided to do it. We never told him.

 

My son is now on Augmentin from 01.06.2012. He was taking 850 mg of Augmentin for 2 weeks before IVIG; and 2 weeks after IVIG. Now, for the last 2,5 month he is taking 345 mg of Augmentin per day. 2 days ago, I started to raising the dose; so for the last 2 days he is on 850 mg augmentin daily.

We were at the hospital 2 weeks ago, because he had vascullities; and they made there all the tests including troat culture; wich came back fine - no strep ; but they found CANDIDA ALBICANS; so he is taking NISTATIN and probiotics.And that's all.

 

After IVIg his condition improved – he was medication free, but, I must also say that last year, ( when IVIG was not even in our minds, ), during the summer hollidays we decided to try to put him off of medications, and he was tic free for 5 month. Than it all came back suddenly, just overnight. He was back on Orap again untill June this year. Than we tried IVIG. So, we still can not tell if the improvement is because of IVIG or…?

Even do, I have noticed 1 thing: before IVIG; when his vocal tics started they never improved whiteout medication (Orap, Risperdal); and after IVIG it seems that they come for 2 – 3 days, and than they stop. Hope this time will also be like this..

 

I agree, I will write to dr. K today.

 

 

Thank You ko's mom for giving me the adresses - I will contact them definitly.

At least, You in USA have some options - here aren't any..! So, this forum means really a lot to me..

 

Hi,

are you giving the Augmentin 1x daily or 2x daily? I would give it 2x daily since it has a short 1/2 life (I know Dr. K likes 1x daily sometimes, but others disagree with him on that due to the short 1/2 life of amoxicillin/clav. acid. There are many discussions re once daily Augmentin. Here is one http://www.latitudes.org/forums/index.php?showtopic=11782 and if you google "once daily augmentin" you can find more).

[croatian mum]

Thank You all for Your answers!

 

The doctor gave him te diagnose based on his condition (vocal, motor tics, OCD, behavior; rage, ecc), and previous strep infections. The diagnose came 6 years after the simptoms started. No one (as far as we know) has never checked for myco plasma pneumonia lyme, babesia, or bartonella, simply because there are no doctors here! We have seen so many different doctors, but with no sucssess. It is difficult for us, because you have at least the doctors and experts there, and here are NO proffesionals or any other doctors with any clue about it.

 

That's why we went to Italy.Before IVIG I have consulted this italian doctor who gave him TS diagnosis 3 years ago. But, he just DON'T BELIVE in pandas and IVIG treatment; and he sead that PANDAS is not yet confirmed – BUT – that he agrees about possible strep conection. So, we were affraid to tell him that we will do IVIG – because he was so much against it; and we didn't want to lose the only doctor who was available.

 

But, after reading and spending hours on this forum we decided to do it. We never told him.

 

My son is now on Augmentin from 01.06.2012. He was taking 850 mg of Augmentin for 2 weeks before IVIG; and 2 weeks after IVIG. Now, for the last 2,5 month he is taking 345 mg of Augmentin per day. 2 days ago, I started to raising the dose; so for the last 2 days he is on 850 mg augmentin daily.

We were at the hospital 2 weeks ago, because he had vascullities; and they made there all the tests including troat culture; wich came back fine - no strep ; but they found CANDIDA ALBICANS; so he is taking NISTATIN and probiotics.And that's all.

 

After IVIg his condition improved – he was medication free, but, I must also say that last year, ( when IVIG was not even in our minds, ), during the summer hollidays we decided to try to put him off of medications, and he was tic free for 5 month. Than it all came back suddenly, just overnight. He was back on Orap again untill June this year. Than we tried IVIG. So, we still can not tell if the improvement is because of IVIG or…?

Even do, I have noticed 1 thing: before IVIG; when his vocal tics started they never improved whiteout medication (Orap, Risperdal); and after IVIG it seems that they come for 2 – 3 days, and than they stop. Hope this time will also be like this..

 

I agree, I will write to dr. K today.

 

 

Thank You ko's mom for giving me the adresses - I will contact them definitly.

At least, You in USA have some options - here aren't any..! So, this forum means really a lot to me..

 

Hi,

are you giving the Augmentin 1x daily or 2x daily? I would give it 2x daily since it has a short 1/2 life (I know Dr. K likes 1x daily sometimes, but others disagree with him on that due to the short 1/2 life of amoxicillin/clav. acid. There are many discussions re once daily Augmentin. Here is one http://www.latitudes.org/forums/index.php?showtopic=11782 and if you google "once daily augmentin" you can find more).

[kos_mom]

Croatian Mum,

Please let us know how your son is doing and how successful you are in getting some help through some of the doctors listed. You can always post here as you move forward--forum participants have a wealth of knowledg and experience. In particular, if you decide to contact the doctor in Italy, you might let people know how helpful she is--I imagine there are people from other areas of the world who are monitoring these boards for help with their kids who may not have the resources to consult in the US but could make it to Italy.

Ko's Mom

[pr40]

Mi smo imali nesto uspeha sa NAC (n-acetylcysteine), gluten-free dijetom, i ribljim uljem.

sve najbolje!

petar

[croatian mum]

hello again,

 

glad to share with You that my son's scream is gone! I've raised up Augmentin to 2 daily (875 mg in total); and this loud screaming is gone!!

 

But, he has got a new vocal tic - he is saying ''yes' instead of screaming..it's more of a private tic, not that noticable..I'm aware that the tics didn't go away, but he can at least funktion much better, and he couldn't funktion with the screaming.

So, how to be clever engough to know if IVIG or Augmentin have helped; or is this just a way that pandas goes?

When I'm thinking back - before IVIG; his tics would never improved or never even changed whiteout medications (Orap; Risperdal) - and now they did; and on the other side - the ticcing is not gone - they have just changed to some other tics.

 

He still has about 10 - 15 different very ''small'' motor and vocal tics, OCD, but, regarding to what we've been through we can all tolerate them.

 

I have got so many questions(abou vaccines; mood; irritability; OCD ecc.) , but I think that I should open a new topic for some of them, so, hope to hear from You soon.

[croatian mum]

Mi smo imali nesto uspeha sa NAC (n-acetylcysteine), gluten-free dijetom, i ribljim uljem.

sve najbolje!

petar

 

hvala petre;

i mi smo probali svašta; od raznoraznih dijeta; do vitamina koje sam naručivala iz USA, itd. Čini mi se da ništa nije pomoglo dugotrajno..tikovi se smire pa se vrate i to taman kad pomisliš da je nešto pomoglo..

Možda ovo sa IVIG-om ipak uspije. Vidjet ćemo, vi ste barem tamo, pa je lakše doći do informacija i svega ostalog, a mi smo ovdje nekako prepušteni sam sebi - da se borimo kako znamo i umijemo..i nadamo se da će proći..

sretno i Vama!

[pr40]

We don't have any experience with steroids but from other posts I know some have had quite good results. I am not sure if your tried them. You can also start a new tread and do a search on steroid tapers of this forum. just an idea.

Edited October 7, 2012 by pr40